Lupus and Pregnancy: What you need to know
Can I have a healthy pregnancy if I have SLE?
For lupus patients, just moving through the activities in daily life can be a struggle. Living with an unpredictable chronic auto-immune disease like systemic lupus erythematosis (SLE) can also bring up many questions about what the future may hold. For many women suffering with SLE, one of those questions may be, “Can I have lupus and have a healthy pregnancy?” We hope to answer this question, as well as many of the others that would naturally follow, in this blog about lupus and pregnancy.
Many lupus patients absolutely can have successful pregnancy. That being said, the risks can be inherently higher for women suffering with SLE. The healthier you are at the time of conception, the better chances for a healthy pregnancy, delivery, and baby.
Your physician can help you identify the ways in which you can increase your chances to have a healthy outcome to your pregnancy. We will discuss this more in the section below on Preparing for Your Pregnancy. If you become pregnant unexpectedly and have lupus, please visit your rheumatologist and make an appointment with an obstetrician immediately, to assess your level of health and obtain any necessary blood tests.
As noted above, it is true that lupus patients are at a higher risk for developing complications than the general population which is why it is so important to be closely supervised by your rheumatologist and your obstetrician before, during, and after your pregnancy.
5 Steps for Preparing for Your Pregnancy
To ensure the best outcome for you and your baby, there are steps you can take and what you need to know:
1. Make sure your lupus symptoms are under control- The first thing to do is have a complete physical examination and blood tests by your rheumatologist or primary care giver prior to becoming pregnant to help determine the best time for conception. It is especially important to measure kidney function and other antibody tests to determine the risks for fetal loss at 10 or more weeks of pregnancy.
Pregnancy has a much higher chance of success if you are in your best health. It is usually recommended that your lupus has been in remission, or completely under control, for at least six months prior to getting pregnant.
Important fact: 7-33% of women in remission at least six months before becoming pregnant will have a flare during pregnancy in contrast to more than 60% with active SLE at the time of conception will flare during pregnancy (see sources in footnote.)
2. Review the lupus medications you take with your obstetrician and rheumatologist- Some medications you may be taking like methotrexate, cyclophosphamide, mycopenolate, mofetil, lefllunomide, and warfarin may can be harmful and should not be taken while pregnant. Some drugs need to be stopped months before trying to become pregnant.
Hydroxychloroquine is one medication that could and should be continued if taking prior to pregnancy as it has been shown to contribute to better pregnancy outcomes for women with SLE.
3. Select a high-risk obstetrician– Selecting an obstetrician who is familiar with managing high-risk pregnancies, would be a wise choice. In addition, choosing to deliver at a hospital with a Neonatal Intensive Care Unit or other advanced facilities, can provide any specialized care that you or your baby may require after delivery.
4. Check with your insurance carrier- Make sure that your insurance plan covers you- and your baby’s health care needs, as well as any problems that may arise. Not having adequate insurance should not keep you from getting the treatment you need.
5. Follow the general recommendations for an optimum pregnancy outcome- Take a supplement that contains at least 400mcg of folic acid, stop smoking and consuming alcohol or recreational drugs, reduce caffeine intake to less than 200mcg per day, test for rubella, varicella (chicken pox), HIV, hepatitis B, and any other inherited genes.
What can I expect during a pregnancy with lupus?
Women with lupus and women without lupus can both expect to experience similar discomforts that can make it difficult to determine whether the symptoms are lupus-related or simply those common during a normal pregnancy. This is why it is especially important to be closely monitored and have regularly scheduled visits with your obstetrician for the duration of your pregnancy. The good news is that the risks of a lupus flare do not increase in pregnant women when compared to non-pregnant women. This being said lupus flares can occur during pregnancy or even immediately following delivery. These flares are not typically life threatening and can be treated with steroids.
Some of the symptoms that can be confusing and/or concerning but are common in a normal pregnancy include the following:
- Swelling of the hands and feet
- Joint discomfort and pain, especially in the lower back
- Shortness of breath (due to the shifting of the diaphragm to make way for baby)
- Numbness or pain in one or both hands (carpal tunnel syndrome is common in pregnancy)
- Skin changes
- Sleep disturbances
- Digestion problems
- General hair loss or thinning of the hair
- Pregnancy blush, or a pinkish glow over the face (blood flow increases during pregnancy)
Some of the differing symptoms to pay more attention to that can signify a flare during pregnancy are:
- Butterfly rash across nose and cheeks
- Patchy hair loss
- Chest pain or breathing problems
If you experience any of the above symptoms or have concerns that you may be flaring, report them immediately to your physician. Any flare that is caught early is easier to treat than one that has progressed. Better safe than sorry, right? It may also be helpful to keep a daily pregnancy journal. You can look back on it for years to come, in addition to being a helpful tool to recognize patterns and/or symptoms you may want to report to your doctor. Make that your first gift to yourself and your baby!
Some complications that can occur during pregnancy with lupus:
- Pre-Clampsia (high blood pressure after 20 weeks of pregnancy)
- Miscarriage- Miscarriages occur in approximately one-fifth of lupus pregnancies. If you have active lupus symptoms, high blood pressure, active kidney disease, or antiphospholipid antibodies, miscarriage is more likely to occur.
- Early or Pre-Term delivery– 3 in 10 lupus patients are more likely to deliver before completing 37 weeks of pregnancy. Backache, pelvic pressure, bleeding or other fluid coming from the vagina, abdominal cramping, or contractions can signal pre-term labor.
After the 28 week mark of pregnancy, women with lupus or SLE, will most likely be seen every one to two weeks by their obstetrician to check on the health of both mother and baby.
During labor and delivery, women who have required steroids to control their SLE during pregnancy will receive an increased dose, called a “stress dose” which will help the body respond normally to the physical stress of childbirth.
Are there any risks for the baby?
There are no significant risks for the baby, and most lupus patients do give birth to healthy babies. Babies that are born to lupus patients are at no greater risk for birth defects or intellectual disability (also known as mental retardation) when compared to those born to women who do not have lupus.
If you are a lupus patient with anti-RO/SSA or anti-LA/SSB antibodies, there is a small (less than 3%) chance that the baby will be born with congenital heart block. This is one reason that your physician will regularly monitor your pregnancy, checking for any abnormality in the baby’s heartbeat. If a heart block or heart disease is present, your physician may prescribe steroids to you during pregnancy to increase the chances for a positive outcome for the baby.
For the lupus patients with anti-RO/SSA or anti-LA/SSB antibodies , there is also a 25% risk of neonatal lupus which consists of a raised red rash that typically appears around the eyes and scalp. An abnormal blood count may also be present. This is not a severe form of SLE and usually disappears between 6-8 months of age, with no recurrence.
What do I need to know for after delivery?
As mentioned above, some women may have a flare of SLE post-partum which is why it so important to be closely monitored by your physician after the birth of a child. Breastfeeding is recommended for most women with lupus with no increased risk of neonatal lupus, however, there are several lupus medications that can affect the breast milk and should therefore be avoided. Discuss this topic in depth with your doctor regarding what is best for you and your baby, but here are some general recommendations:
- NSAIDs- Can be used but avoid aspirin
- Prednisone- Only in low doses of under 20mg per day
- Antimalarials, Warfarin, Heparin- These all appear to be safe while breastfeeding.
- Azathioprine and Cyclosporine- Can enter the breast milk in small concentrations. Should be avoided if possible but speak with your physician as it differs case by case.
- Cyclophosophamide and Methotrexate- These should be avoided while nursing.
- Lupus and Pregnancy: In conclusion
Making the decision to have a child is a big step in anyone’s life. And, while this decision is one that requires great care and planning, this all the more true for someone suffering with SLE. If you are a lupus patient and want to become pregnant, planning at least six months out before conception will give you and your baby the best chances of success. This can help you and your physicians determine the best time for conception, make sure that your lupus is under control and you are at your optimum health, as well as allow you proper time to discontinue use of any medications that could be harmful to your unborn child. Even though the pregnancy risks may be inherently higher for women with lupus, it is possible to have a healthy pregnancy with lupus.
We invite you to read some encouraging stories that were shared with us by women with lupus who have overcome devastating obstacles, such as miscarriage, and go on to have healthy pregnancies, like Morgan’s above. Please visit our Stories of Hope page to read them. If you have a Story of Hope to share about your journey to motherhood with lupus, please do so by clicking here.
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Author: Karrie Sundbom
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